Is starting a local support group for Lyme a good idea? Has anyone here done such a thing?

The common theme for most all of us is feeling alone with this illness. I know that I feel terrifically isolated and see this sentiment echoed so many times in this forum and in other places. It seems one of the overriding symptoms of lyme disease is feeling alone.

This forum and others is so helpful and wonderful so the thought occurs about local support groups of which there are none in my area. Checked craigslist and meetup.com and nothing. How this can be in a Lyme endemic area such as I'm in is surprising.

Do any of you go to a support group? Have you thought about starting one or have you started one? Do you think no one would come because they're (we're) all sick?

Really interested in everyones thoughts on this.

Hi Tillybear
There is a local support group that I discovered in our area (east coast of Canada). They meet monthly on a regular evening for 2 hours (in a free meeting space made available to the community in a large grocery store). The rough format for the meeting is local / regional / national lyme news (e.g., there will be a conference to work towards a national strategy on lyme in May), a feature topic (could be a video or someone local speaking on a topic), one individual telling their lyme journey, general discussion of lyme experiences in the month amongst members - followed by planning and discussions for improving awareness, advocacy, support locally.

I've found the meetings much like this site - exceedingly helpful as I become educated about lyme, learn about treatment options, and seek supports about issues as my son (and me, as I start treatment soon) works towards wellness. The added benefit of a local group is there is sharing of information on how and where to access local resources and supports, which would not tend to find its way onto a forum like this.

I find the lyme battle very isolating or lonely because no one really understands how challenging it is each day - and that's the beauty of this site, as we've all experienced; as you get to know folks in the support groups, there is a similar feeling of a growing strength and less isolation in numbers. And, like here, the group really are there collectively and / or individually when you need them.

Finally, I'm astounded almost weekly by the number of local people I meet who have health issues where they should be aware of lyme as an option - and they aren't learning about it from the physicians here. What I hear again and again is: "I had no clue that it even existed here." So the most critical role of a local support group is that as the collective grows the existence of lyme becomes more recognized locally, the word spreads, and stories are told, and - in time - one hopes there will be a greater number of people who are diagnosed and treated, properly, in a timely manner - instead of the years and years that most of us experienced.

A friend and I are thinking about starting a support group... but we are both still not well enough to take it on...

We have a fb community (small country, not that many members) and sometimes a member posts a note asking if people nearby her/his town would like to meet. Just for a few hours, to get to know eachother and to have a talk. I did it in the past, and it's really nice.

It's just nice to be with other people dealing with Lyme. Doing it on the compute just isn't the same, but if you want to start with that, there are likely some yahoo groups.

Maybe your doctor would let you post something about wanting help to start one in your area. It wouldn't hurt to ask.

Having a group that is open to alternative methods is good. I've been to one that was only about ABX and I didn't care for it. I go to one now that is a very good group with a good number of people, almost too big sometimes. We talk about all kinds of healing modalities and about ABX too. Good luck! :)

I love the idea. It would be nice to connect with others. I have felt alone. I haven't looked for a support group locally, but there may be one...I'm in upstate NY and Lyme is rampant.

Interesting. I just looked at the coop calendar to see if there might be a support group there. Found an herbalist who works with Lyme...I'm going to sign up for a session with her!

http://www.honestweight.coop/page/events--calendar-5.html

I was involved in two Fibromyalgia support groups. One that was about 45 minutes from my home but for a while I was able to share the commute with someone close. There other was very close.

What I found though was that, new people would come in and we would spend all our time supporting them. We were all using the Guafenisen Protocol and so the more you knew the more people depended on you to know. Eventually, I just stopped going because I wasn't getting an support. I only got sicker and sicker.

Now I know that I have Lyme and I have something to fight.

Don't get me wrong, I appreciate all the help (and time and energy) of everyone here but I think with an online support group at least people can choose when and how long to spend. I will be eternally grateful to this group. When I was pointed in the direction of this group, I was literally without hope. I'm a researcher by nature and training. The only information I was able to find was that there was no treatment. I had already decided my only option was going to be Chinese medicine (or herbals) but really had no direction.

Sorry I didn't mean to get maudlin.

I just meant to point out that it takes a lot of energy to attend a support group and even more if you are the person running it and even harder to start it.

It's easy for me to say though because I'm an introvert. I don't need daily contact with people as a matter of fact when my husband travels for work (frequently) it's my son and I and the dog. We will go hours without any conversation. But this works for us.

If you are an extrovert and being around others gives you more energy, then a local support group would be good for you. Just make sure you don't expend too much energy helping others that you don't get well yourself.

It comes down to the Spoon theory. If being with others who are going through the same thing increases your number of spoons go ahead and do it. But if it takes up too many spoons then you may want to wait until you are doing a little better.

Kim

We're lucky to have a very kind, mild minded man running our group. That makes a big difference. We ask questions, share our experiences, offer support, and once in a while we'll have a speaker come in. Our leader keeps things peaceful, not that's it's needed much. He has had other members take over for him since he may be stepping down and I noticed that the group was smaller after that, so I don't know if it was the winter keeping people away or if it was our leader not being there. Time will tell. It would be hard to find another person like him.